4 Mothers, 4 Questions (Part 1)

On July 11th 2017, BBC Wales published the story of Peter Baldwin, a 13 year old boy who tragically died before his condition, Type 1 Diabetes, could be diagnosed. He didn’t live in a third world country where there is a lack of access to adequate healthcare and resources. He lived in Wales, where a publicly funded healthcare system operates and yet still, his condition (which according to the WHO affects over 420 million people globally), went undiagnosed. That such a common and well researched disease can still go undetected in the UK should astonish and terrify us all. The story of Peter Baldwin has inspired me to talk to other mothers of diabetic children and ask them their diagnosis story and what, in their opinion, could be done to improve the current situation.

Anwen and Olivia

Olivia Owen is a Community Staff Nurse in Merthyr Tydfil, South Wales, today she bravely shares her story with you.

What is your child’s diagnosis story?

“My daughter Anwen, always was and still is, a very active, vivacious, chatty, bright and energetic child with an adventurous and fearless spirit. Shortly after Christmas 2015, Anwen (aged 9), was briefly unwell with a viral throat infection. She fought it off with her usual vigour but from then onwards, she became more frequently fatigued and listless. At the time I put this down to various things: busy weeks at school or not going to bed early enough (iPad related) which of course you do as a Mother. In February 2016, I took her to see our GP; Anwen was complaining of abdominal pain and pain when going to the toilet. At this point, I should mention that the GP carried out a urinalysis and found that Anwen had a urine infection (which I suspected). I didn’t, for a second, consider diabetes; so I didn’t question whether or not the urinalysis was positive for glucose or ketones. I assumed if it had been, the GP would have noticed. But I often think maybe she didn’t look for it and maybe the events of the following month would have been prevented if she had. Anwen completed a course of antibiotics though continued to be frequently fatigued and out of sorts.

“Following Anwen’s birthday in early March 2016, I noticed that she had become even more tired and listless and had a bit of a head cold which we treated as normal with paracetamol and fluids. On 10th March 2016, Anwen had some friends to sleepover as a birthday treat. Of course we pulled out all the stops: pizza, sweets, crisps, a chocolate fountain and a birthday cake. All was well until the early hours of the morning when Anwen was really nauseous and complaining of stomach pain….I blamed it on all the junk she had eaten…little did I realise.

“The next morning I went to work as normal, leaving Anwen with her Dad. I should say at this stage that I am a nurse and was at the time working on a busy acute surgical ward. While reflecting on the events of the night before, a colleague mentioned in passing “she’s not diabetic is she?”, to which I actually chuckled. As the day went on though, the thought of diabetes stayed with me but I kept talking myself out of it. When I got home that evening I went to my Mother-in-Law’s house to pick Anwen up. And there she was, she had just come out of the bath and was wearing an oversized t-shirt, the image still upsets me today because she was so pale with sunken eyes and she looked so thin. I knew…I could have cried there and then.

Anwen in hospital

“We made a plan. My husband would take her to the GP first thing in the morning with our concerns and I would take a urine sample to work with me to test. That night Anwen woke up about four times to ask for water and was passing urine very frequently. I knew. The next day, her urinalysis was positive for ketones, glucose and acidosis. I passed this information on to our GP and Anwen was admitted immediately to hospital for treatment and Type 1 Diabetes was also confirmed. Anwen had a 24 hour stay in hospital to rectify her pH levels which only rebalanced after approximately 10-12 hours of IV fluids and insulin. Our verybrave girl gave herself her first insulin injection with very little drama and fuss the following morning thanks to the excellent support from her Diabetes Specialist Nurse. I must say from the moment of her admission to hospital; the care she received was second to none and continues to be so 2 years on.”

How did you feel when you heard the diagnosis ‘Type 1 Diabetes’?

“I suppose this is where things are a little different for me being a nurse because I didn’t hear the diagnosis or the even the possibility of a diagnosis from somebody else. I had essentially figured it out myself when her symptoms became acute and we had her admitted. I had also prepared my husband, son and family the night before her admission. Initially I was in autopilot; I wanted to get her well. I wanted to know everything: every result including renal function, liver function and every pH test they took in that first 24 hours. I had seen the effects that uncontrolled Diabetes has on a person so I was devastated. It felt like a loss, like I was grieving for the life that she should have had. I was angry. Why my child? If I could have taken the disease for myself I would have, and I still would. But the real and unrelenting heartbreak for me is that I didn’t see it sooner, I should have seen it sooner. I know about Diabetes, I’ve studied it and treated patients with it so why did it take me so long to figure it out? I think that guilt will be with me forever. The first few weeks, post-diagnosis, was all about learning as much as we could on how best to treat Anwen and supporting her with self-care. Those initial acutely raw feelings evolved into more positivefeelings of acceptance and determination to own and control this condition together as a family.

Anwen post-diagnosis

“Anwen is now 28 months post-diagnosis and I must say she is an absolute inspiration. Her condition is well controlled on the whole with an insulin pump. She manages to juggle school, hobbies, school trips and going out with friends together with all the added extras of hypos and hypers, blood testing, carb counting, bolousing etc. She rarely complains or gets fed up and aside from prompting and support from us she is pretty independent with her diabetes care. I still have moments of sadness when I think of how much she has to deal with on a day to day basis, what may be in her future and what challenges she is yet to face but I wouldn’t be a Mother if I didn’t.”

In your opinion, how could improvements be made to the diagnosis process in the future?

“I think that Type 1 Diabetes should be highlighted to parents more at every point of contact very much like Meningitis is currently. I believe that there is a real lack of knowledge in the symptoms of this condition amongst parents. I also think that GPs should be considering the condition when a child presents with so called ‘non-specific symptoms’. At present, in ante-natal clinics, baby clinics, GP surgeries etc. you see lots of posters and pamphlets giving information on various childhood illnesses and I feel that Type 1 Diabetes should be there too. Due to a very successful campaign on Meningitis I think the majority of people know the symptoms and I feel the 4Ts campaign could garner the same results.”

If you could share one piece of advice to other (non T1D) parents around the world, what would it be?